Clinical trials: Parents’ experiences

Views on future trials

We asked parents if they would consider involving their children in future medical research if the opportunity was offered. All parents said that they would ‘consider it’. Some parents had already enrolled their children in more than one trial.
However, as with their previous decision about enrolling their children, parents said they would be considering the risk and benefit to their children, the demands of the trial in terms of time and the wider benefits of the trial for other children and medical science. They said they would want good, clear information about the trial and would want to be sure their children were happy to take part and understood what was expected of them. They would want to be aware of any potential side effects, and that any treatment such as medication was safe and previously tested. Knowing that a drug had been tested and safe for their children to take was important to all parents. The majority of parents said that they would not enrol their children in trials if the treatments or drugs had not been previously tested for safety.
However, as Alison suggests, having good information should also include the possibility of a trial showing that a new treatment has no beneficial effect. Alison refers to a trial that her son took part in during his stay in neonatal care. The doctors and nurses were very positive about the trial and so when the trial showed no beneficial effect of an antibiotic to reduce sepsis in very premature babies, it was slightly disappointing. This is important and researchers may need to consider how to manage parents’ expectations at the beginning of a trial.
Randomised trials are done when we don’t know which treatment is best, in other words when the relative merits and disadvantages of different treatments are uncertain. It is important to realise that, on average, new treatments are as likely to turn out worse as they are to turn out better than existing treatments. This means that, going in a trial, everyone, regardless of which of the treatment groups the computer allocates them to, must have similar chances of a good outcome. If, in spite of the treatment uncertainties that the trial has been designed to address, people would strongly prefer one of the treatments being compared, they should not volunteer for the trial.
In addition to sufficient information and being able to ask questions, the majority of parents felt it was important to include their children in the decision where possible.
Most parents we talked to would consider other trials if there was minimal discomfort to their children and if there were benefits for their children’s health. For trials that were more invasive such as taking medication or required lots of tests, some parents said they would like to find out from other trial participants what their experience had been before making a decision to enrol their children. 
Contributing to medical knowledge and helping other children were also important to parents although some parents were unconvinced about their children taking part in randomised placebo controlled trials. (See ‘Understanding allocation (randomisation) to a treatment comparison group’ and ‘Why do we have clinical trials in children and young people’ for explanations about different trial designs.)
Most parents we talked to would support their children if they wanted to take part in trials in the future, although they also recognised that making a decision for yourself and making a decision for your child is a very different thing. 
Having good rapport with the research team, doctors and nurses involved in the trial and treatment of their children were also important factors in making parents feel positive about future research opportunities. 
Sandra and her daughter, aged nine, were invited to take part in a study to improve knowledge and prognosis of juvenile dermatomyositis (JDM). JDM is a rare condition that affects children under the age of 18 and affects approximately two children per million. It is an autoimmune disease where the body’s own immune system attacks the body, skin, muscles, and internal organs.

Last reviewed September 2018


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